ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: marystro on February 06, 2007, 02:16:59 pm
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Hi all,
Been so busy lately - work, travel, kids, etc...
Just had my 6-month MRI this morning. Audiogram tomorrow. Then I will be sending the results to Stanford.
Thought I will give you all an update so far. Just louder tinnitus and very mild sensation on my tongue. Must be the swelling. Keeping my fingers crossed. Will let you all know when I get the review from Stanford.
Missed talking to some of you but still checking the forum...
Mary
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Hi Mary,
Good to hear from you and knowng that it is just a busy life keeping you from posting. Many of us will look for you MRI results knowing that it is only 6mos post CK - it may show nothing..... But maybe a little darkening in the center..... just to feel us goood?????? ;D :) :D
Flier58
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Mary-Mary... whatcha' doin'? ;)
Hun, you and I... right on target! My hearing test this Friday, MRI on Monday and immediately meet with the BI CK team (and if they pull in the cutie-patooties from Harvard Med again, well... *blush*)
Can't wait for your updates!!!!!!!!!!!!
xo
Phyl
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Hi Mary: I've been wondering about how you are doing. I am about 1 month behind you in the process so really interested in what you find out. I will have my 6 mo MRI in April.
Really cheering you on!!!
B ev
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Hi everyone,
I had MRI yesterday and audio test today. Just got the CD and reports. Thought some of you may be interested in the results:
MRI Impression: "Change in character but not size of the left vestibular schwannoma felt to reflect some changes of radiation-induced necrosis"
Hearing: "SRT 35% (6 months ago was 25%)..." + the high frequency (4000-8000) looks pretty bad - so AN ear's hearing is definitely lowered somewhat
I am interpreting this as expected (no change in size, hearing deterioration, in my case, by about 10%) but "necrosis" seems a bit early... hmmmm...
Will be sending the CD and reports to Stanford and am holding off on celebration until I get doctor's official review.
Mary
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Hey Mary- hang in there. Dr. Soltys told me that this would take 3-5 years for the bugger to kill off. (And at age 44, I do feel like a babysitter to the CK staff at Stanford).
So I think it's really cool that you've got some progress albeit small and vague pending final analysis. - thanks for keep us posted. I just did my first treatment today.
Take care, Annie
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Hi Annie,
I have been so busy lately and have not been on the board for a little while. Whoa! Lots of great posts that I missed. I need to get back to this to get my daily dose of "family" chat. Feels like we are so close with everyone sharing our AN journeys together. You know there are only a handful of us out there and we are just as close as a family can be.
I am so thrilled that you have Dr. Chang and Dr. Soltys!! And is Larry still there? And Elizabeth? Please say "hi" to them for me. They will remember Alex and his candy bowl... Aren't they the best we can ask for! I didn't tell you the story that Dr. Chang changed my first day of treatment to an earlier slot so that Alex could go to bed at his regular bedtime. Nicest bunch of most down to earth folks and yes, I feel like I am their babysitter also ;). I just LOOOOOOOOVE them!!!
I notice your AN size is about the same as mine. We must stay in touch to keep posted. And, Mark - if you are reading, I have to say even the cafeteria food at Stanford Medical Center is awesome, wholesome and healthy! It's definitely a worldclass outfit. The CT building is like a hotel lobby with grand piano and the works!!! Just like a spa!
Yes, although progress of my 6-month is small but I am relieved to see the word "necrosis". So, Phyl, flier58, BevM, I am hopeful. Like Phyl said "day by day"... For those who are still considering treatment option, CK is my recommendation given the tradeoffs!!!
So, I made copy of the MRI CD and reports today after I came home from the hearing test. I will plan to send them to Stanford tomorrow. Hopefully I will hear the result soon. The only thing I am wondering is if the tinnitus will improve overtime and the hearing. Oh yeah the hearing. Now I tell people that I can't hear --- a perfect excuse to dismiss things that I really don't want to hear ;) ;D.
Definitely missed chatting in the forum.
Mary
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You know, the lack of hearing is really convenient for certain situations! Yes, will tell the gang hello! And Larry is the best! Actually, they all are.. going in for the last shot tomorrow- take care, Annie
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Hi Mary and Annie,
Mary, I think there is a wonderful news there for you (and us). I hope youi have early signs of necrosis - something that all of us (radisurgery) people pray for. Soooo...... here I go praying for you and the rest.
Flier58
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Don't forget to say Hi to Larry for me too! :) They're all great!
Being deaf on one side certainy does have some advantages. I can think of a couple off hand, being able to sleep anywhere as long the good ear is covered, and being able to ignore unwanted nois or talk by making sure the bad ear is facing that source! Perfect for nag avoidance.
Good luck with the last session!
Ciao,
Lorenzo
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Sent in CD and reports yesterday. Keeping my fingers crossed with Stanford's review... ;)
flier58 - you are so hopeful! yes, I need to think positive for everyone!!! ;D
Lorenzo - I love the ways you take advantage of bad hearing. May be we should start a thread like "100 things you can do if you can't hear well from one side" or something... it will sure be a best seller and beat the next Harry Potter book. BTW, I can't wait to get my hands on that one - I hope Harry won't die... :'(
pearchica - welcome our newest postie!! Now go celebrate!
Phyl - can't wait to hear your results next week. I am sure it will be terrific. May be we should do a virtual celebration together. Got to come up with some ideas about that...
Love you all and others. Keep thinking good thoughts, everyone!!!
Mary
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Mary,
Start celebratiing! I'm am currently online at my brain surgeon's office and just had my hearing test done! OMG! Go read AN Community as I'll do a post there!
Huggles to you! :)
xo
Phyl